Archive for October, 2010

A very short time ago we welcomed PHA Norway to the campaign and just today we received news and photos of their very first kiss collecting activities. President of the association, Hall Skåra, is also a member of a Backgammon league which meets for regular tournaments. His fellow players understood that he had been unwell, but Hall found PuckerUp4PH to be a great opportunity to explain a little more about PH and its impact.

He says he is very grateful, for the reception the initiative received when introduced and that members of the league were happy to apply the lippy and give their kiss although, perhaps some were not as comfortable as others.

An article about PH and the campaign has today been uploaded to the Backgammon leagues website and further PuckerUp4PH events will also be carried out at upcoming tournaments.

Hall’s son plays Basketball at a national level and enquiries have been made as to whether the team might play this Sunday, Halloween, in blue lips at a prominent game sure to attract members of the media – a great idea to get attention for not just the campaign, but for PH through Norway.

“As head of the Norwegian patient association, it was natural for me to continue the campaign in Norway,” he says. “This is about creating publicity for a rare disease. It is important that the correct diagnosis made at as early as possible, andthis is why it is important to spread knowledge about the disease to the public.”

In the UK over 180 kisses were collected recently at Lafarge Aggregates Head Office in Leicestershire, with the Blue Lips spectacle prompting a lot of questions about the condition and the campaign.

Hannah Perry, together with colleagues Andrew Murphy, Hayley Clark, Jane Atkinson and Kim Wright inspired colleagues to embrace the challenge and PuckerUp4PH. Special thanks to the company’s directors and a very important client who halted a vital business meeting so that they too could don blue lippy and lend their Lips to the cause

Over to Spain and the PH patient association Fundación Contra la Hipertensión Pulmonar (FCHP). Although they joined the campaign a little later than some of the other associations, their enthusiasm and creativity has been outstanding and inspiring. The council of the Municipality of Parla, near Madrid is a major supporter of the FCHP campaign having distributed entry forms and blue lipsticks amongst all of the council’s staff and set up three locations in the city, including a booth at Town Hall, where the general population can go to participate in the campaign. Even the local police have Puckered up 4 PH.

Alongside collecting as many lip prints as they can FCHP has secured a huge amount of media coverage and have introduced PuckerUp4PH at a series of large events, sharing information about the condition and collecting blue kisses.

The International Day of the Elderly was recently celebrated in Parla with music, dancing good food and lots of Blue kisses. Over 500 blue collected on this day alone!

Our Spanish friends at FCHP are also collaborating with a professional basketball team “El Baloncesto Fuenlabrada” just outside of Madrid who have invited the association to collect kisses and speak to fans about PH at their next couple of games. The campaign is also being promoted through the team’s website.

Olga Colman, a member of FCHP last week took her kits along to the “Day for Patients with Rare Diseases” at the General Hospital of the city of Valencia in a continuation of her campaign in the area. She reports that a lot of interest was generated this day which should result in the collection of further blue kisses!

Over to the USA, or rather to Afghanistan, where Jocelyn Cavendar has been working to collect blue kisses and increase awareness of PH with fellow employees from Comprehensive Health Services who provide on-site medical care for Air Traffic Controllers and their support auxiliary staff in Kabul. Jocelyn has been inspired by her friend Sean Wyman, a member of the PHA in the USA, to organise several awareness events at the Moral, Welfare and Recreation centre and has kindly translated the materials into Russian for the Russian and Balkan members of the team.

In Mexico, the campaign has really taken off thanks to the efforts of both the PH patient support groups as well as individuals. One lady in particular, Silvia Galvan has been working particularly hard to promote the campaign and PH awareness in every sphere of her life. In addition to spending time with a local Scout group, persuading local cinema staff to get involved, working with schools in the area and puckering up at sporting events, Silvia even opened up her home to friends, family and colleagues over several days. She has collected an astounding 600 kisses already – and she’s still going!

The Puerto Rican support group GAPHPPR led by the “Lips of 2010”, Luz Batista-Santiago, have continued their inspiring work and have once more taken the lead in the Blue Lips tally. They have a confirmed count of 4731 kisses, but believe that once all the kisses are returned to them from their members and supporters their actual number could be in excess of 7000 kisses. Their latest PuckerUp4PH activities include two separate schools whose students contributed 300 kisses each to the effort – In one of the school’s the celebrations being led by Luz’s own aunt Mrs Alma Santiago.

In another school at a volleyball tournament, one of Luz’s colleagues, Brenda Diaz, worked with her husband, daughter and mother in law to gather a further 208 kisses from the players, students and faculty. Luz also tells us that thanks to the media coverage they have worked to get over the last couple of months they have had enquiries from other schools and organisations wanting her to come and speak to them and help them participate in the campaign!

And finally: Central America has joined the campaign in a spectacular way co-ordinating an extensive media campaign to reach as many people as possible, achieving coverage on TV, radio and in newspapers and magazines. They simultaneously hosted prominent public events in the likes of Costa Rica, Honduras and Guatemala to allow as many people as possible to participate in the Guinness World Record attempt with a stunning 1675 kisses collected in one weekend between the three countries.

Thank you to everyone who is keeping us in touch with events and initiatives. We will be posting a round up of photos and news presently.

In the weeks to come we are hoping a great many more people are going to get involved with the campaign, gather some lip prints and share their knowledge about Pulmonary Arterial Hypertension. (If you do want to get involved, then look round this site to see how you can do that and if you want to mount an event please get in touch via lips@puckerup4ph.com)

PHA-UK who initiated this campaign and who are working closely with PHriends from Ireland, Canada, USA, Mexico, Spain, Italy, Germany, Norway, Poland, Argentina, Brazil, Australia, New Zealand, Puerto Rico, Costa Rica, Honduras, Guatemala, Israel, Singapore, Asia and South Africa have their annual conference across Halloween Weekend in Manchester. Pucker’s Manchester based colleagues will be attending and hoping to add another few hundred kisses to the tally.

As those of you who have visited this blog before will know, the Pulmonary Arterial Hypertension community and its friends and supporters across the 4 corners of the earth are working together to get more people to be aware of this serious and rare lung condition and in the process of doing so, are looking to collect 40,000 Blue Lip prints to set a new World record. If you are happening across the site for the first time we’d encourage you to look back at some of the truly special things that have happened from Ibiza to Israel as part of this PHA-UK led campaign.

It is so, so wonderful to see such a simple idea catch light across the world and to hear the experiences of each group/patient associations who are doing so much to make this campaign so effective.

Christine Dickler from the PHA in the US, explained to us how the campaign is taking shape there,’ The campaign has been incredibly effective not only in energizing our members, but in creating opportunities to invite their communities to ask them about their illness. It’s not uncommon for curious neighbors to keep their questions to themselves in an effort to be mindful and polite, but for so many patients, it’s a relief and a bit of a gift to have the chance to inform their communities about PH and what they live with. We’ve heard great stories of family members and friends taking hold of the campaign and bringing it out into their own communities, virally. I think it’s helped many patients take a bit of ownership over their illness. It’s certainly been keeping us busy over here”.

This is music to the ears of the PuckerUp4PH team, as empowering people to share their experiences of this condition is a key objective of the campaign. As of course is celebrating life and as you’ll see from the photos below we’ve certainly been acheiving that.

Next week, we’ve got a whole host of happenings from across the World to share with you, so we hope you can visit us once again. Whilst you are here why not find out more about PH/PAH, have a look at some of the patient films, you can even show your allegiance by buying some of our blue lip merchandise, with all profits going back into the campaign. ..and before you leave…please print off one of our entry forms, put on lipstick (it doesn’t have to be blue) kiss the form, add you name and signature and send it back to one of the participating associations…it could be your kiss that makes the difference in our World Record attempt!!

So much has happened around the world in the last month we just haven’t had the time to update you on all the Blue Lips PH awareness events taking place literally everywhere! Here’s a quick A-Z roundup of the latest news and great photos that have come in from PHers all over striving together to set a new Guinness World Record TM.

BRAZIL is putting out the call for Blue Lips collections and families and friends of PHers there have downloaded entry forms from the internet to participate.

CANADA – Edmonton PAH Society collected 110 kisses at the University of Alberta Hospital and has two more events planned there! While Jo-Anne Mainwood in Ottawa has collected more than 500 kisses including those from the school she teaches at, Trillium Elementary, and she has three more schools queueing to PuckerUp throughout October and November.

GERMANY – Bayer have carried out a second round of PH awareness actions collecting an additional 233 blue kisses at an internal Health awareness day.

MEXICO is going mad for Blue Lips Puckering Up on Independance Day, at parties, in Universities and even hosting collections in coffee shops! The “I Have Wings” group composed of friends with a wide range of disabilities also supported their friend Adriana Posada at a recent workshop.

PUERTO RICO: The students of the Daskalos School collected 286 lip prints in one day!

UNITED KINGDOM: Tracie Pannell collects more than 400 kisses in one afternoon at Tesco Supermarket Exmouth. One of Jacqui Boldy’s PuckerUp4PH banners makes it to the ERS congress in Barcelona with the Papworth PVDU Team. Lucinda Duxbury-Smith mans another Blue Lips booth at the Disability Road Show in Kent. Hannah Perry, friend of Jenny Leafe, had everyone from the Directors to the canteen staff of Lafarge Aggregates Limited PuckeringUp4PH.

USA: Friends of the Katie-Grace Groebner including the Piranha’s Football team have been PuckeringUp in California. Shelly Carder in Illanois has a host of dates manning Blue Kiss Booths in Illanois (100 kisses plus and counting!). Misty Angeley is collecting kisses in her community. Beverley Richardson’s family all went blue to support their recently diagnosed Mom! The NY Funwalk was hugely successful, raising funds for the PHA and contributing 158 kisses to the initiative.

All this week at Cessnock Occasional Child Care Centre in New South Wales the kids will be donning their best blues in support of the PuckerUp4PH campaign to set a new Guinness World Record and raise awareness of PH.

The PuckerUp4PH campaign was introduced to the centre by the McGlynn family who are active members of PHA Australia. This is the latest in a series of inspirational awareness events the family has organised to celebrate the life of their little boy, Thomas.

Young Mitchell McGlynn proudly led the other little ones wearing his New South Wales Blues State of Origin jersey as they had their lips painted blue, created their lip prints and consumed blue pancakes before cutting into a gorgeous blue PuckerUp4PH cake to mark the occasion.

The kids have reportedly been revelling in the event and although many had already Puckered Up and kissed their entry forms earlier in the week, they all lined up excited to have their lips painted again before having their photo taken for local newspaper, the Cessnock Advertiser.

With all this activity and the parents of the kids also intrigued to find out more, it has surely not only been a terrific awareness activity, but a fun and loving rememberence of a dear little boy, Thomas McGlynn.

Sharing news of the developments with this campaign is something that everyone on the PuckerUp4PH team looks forward to doing. It is great to be able to share with both the wider community as well as those that live with or are affected by PAH (Pulmonary Arterial Hypertension) of all that is taking place across the World. It’s great to see so many of you celebrating life, spreading the word about PAH, gaining kisses and moving us, lip print by lip print, towards a New World record.

If you are reading this update from any country that isn’t currently participating in our awareness raising & world record attempt ..and would like to join PHriends in Norway, Poland and South Africa who are now joining our initiative..please, please, please do get in touch. We can supply your national/regional group with High resolution PDF files, in your language (if you’d help with translations) for local printing…so please get in touch!!!

This weekend we hope to pass the half way mark to our target thanks to efforts across 4 continents..We need many many more of you to help them in the days and weeks ahead. Together we can make a difference!!

It’s great to learn of people liaising with local supermarkets/malls/libraries to set up a stall and collect Blue kisses. I also hear a couple of the larger cinema complexes have been helpful…as are the many church congregations/faith groups who are lending their lips to suport us.

As you will see from reading the previous entries on this blog we’ve had some really fantastically creative ways to collect kisses…and we look forward to sharing your events and ideas…